Slowing down


#1

Hi everyone I am age 40 and just got the diagnosis Of Parkinson last year in March, I had other problems which includes something called Isaac syndrome, restless leg syndrome and after having my two wonderful children I have had back problems. So a long time on meds ,physiotherapy and steroid injections. When I went to see my neurologist I was so surprised that he gave me this news and that I thought he had made a mistake. But he started me on the meds and soon I started to see the different in the way I walked and my speach and my pain. Knowing this has been almost a year I have been able to speak to people as when I first did I thought one day I will get news they got it wrong, in January I went for the data scan yet that came back Negative. so I was in the thought Ithey had, but as I am taking medication which I and doctor can see a difference to he still says I have it, and that they have caught it very early . So here my thing do I carry on with this medication and believe what they say ?? I have been reading this forum for a long time and I think the people on here may some where experienced this so just needed to ask, thank you all for reading.


#2

Hi Raz1,
Welcome to the forum and thank you for your comment.
We’re sure that some of our members will share their experiences and advice with you soon. If not, someone from the Parkinson’s UK moderation team will respond to you as soon as they can. You’re also welcome to contact our helpline service on 0808 800 0303 to speak to a Parkinson’s UK adviser.

Best wishes,
Edwina
Moderation Team


#3

I definitely have times when I think that they have got my diagnosis wrong.
At some points in some days I feel great.
It’s usually the tiredness that reminds me they are right.


#4

Hi Hubby thanks for your response, yes I too feel that, a day or two will go by and I running around full of energy and than I will just stop as I feel like I have not sat down or slept for a month. Can I ask which medicine you are taking and if you have missed a dose do you feel different?


#5

Hi Raz1,
I think everyone with a PD diagnosis sometimes thinks (hopes) that the diagnosis may be wrong. I’m still doing it on a good day two years after diagnosis.
I too can rush around like mad getting everything done and then suddenly crash into exhaustion. But I was told that if the medication is helping, then, yes it is PD. Unfortunately.
I have set alarm reminders on my mobile so as to not miss a medication dose. I find that helps a lot as it means I do not have to keep thinking about PD and remembering to remember when the next dose is due.


#6

Hi Daffy
Thank you for your response, yes I think you are right just that little hope of them getting it wrong makes you think other wise. I have started to set alarms on my phone to take medicine but after I tire it if I will forget and to take medicine. I now I need to learn but I have found out the my iron levels are very low and for this reason need to take iron medicine and they have changed me to sinemet plus, so let’s see what happens. Also my fingers are very painful, I can’t seem to bend them, I have had to take my rings off too.


#7

That is perhaps the most challenging aspects that I face daily… Watching my husband slowing down and unable to do basic things that used to come so easy. Then on other days he seems fine; that’s when I wonder if the diagnosis was right. Alas it all changes very soon and the lethargy, stiffness, tremors etc come back with a vengeance and I know it’s real. :frowning:
He forgets his meds even though there is an alarm on his phone. He turns to take them then gets side tracked.


#8

Hi to you both,

I must say ladybird I am sure your other half really appreciate everything you do for them, as I now my husband is great, but the days I am doing that little better he feels like the doctor have got it wrong, he is getting his head round me having PD, I do tell him that there are some days are good and some bad, he has started to give me some space , I love him and at times I look at him and feel sorry for him, having the kids to look after and than me, well what I am trying to say is that I now I am so great full that I have him and I can’t understand how hard this all must be for him, he doesn’t talk to anyone about this or go out one or anything, as he thinks I will faint and no will be there to help me, it most be for hard for partners to watch there loves ones go though this.